REFLECTIONS - img1.wsimg.com

A Note from the President

WINTER ISSUE VOLUME 94

REFLECTIONS November 2012

Trauma and Grief: The Dynamic Duo in Sudden Loss 3

Hazardous Cosleeping Environments and Risk Factors Amenable to

Change: Case-Control Study of SIDS in South West England 4

The Grief of a Parent Who Has Lost an Infant 5

Guild for Infant Survival, Orange County—October 17, 2012 8

What Happens After Christmas!! 9

Calendar 12

Donations 13

President

Colleen Ma

Vice President

Penny Stastny

Treasurer

Evelyn Clemente

Recording Secretary

Liz Willett

Historian

Carole Guttilla

Parent Contacts

Jordy Jahn

(949) 501-6346

Arlene Barela

(520) 252-7660

Colleen Ma

(714) 315-4605

Spanish Speaking

Contact

Liz Ramirez

(562) 233-7864

Grandparent Contact

Carole Guttilla

(714)524-7647

Medical Advisors

Thomas G. Keens, MD

Professor of Pediatrics

University of Southern

California School of

Medicine/Children’s Hospital,

Los Angeles

Henry Krous, MD, Vice-

Chair Director of Pathology

Children’s Hospital,

San Diego

Technical Consultant

Andrew Beale

Unisys Corporation

Executive Director

Barbara Estep

Inside This Issue:Inside This Issue:Inside This Issue:

It seems fitting to be writing my final President’s message on what would have been

my son’s 7th birthday. I have spent the last six years working with GISOC in honor of

my son Ryan: Working to raise funds for SIDS research and making peer support a

priority. I have met many amazing SIDS families along the way. We have shared all

the ups and downs that come with this journey. I’ve even had the joy of watching our

subsequent children grow-up together. One thing I can say for sure is that I am a bet-

ter person because of these relationships.

My time serving on the board has been one of immense personal growth and I am

grateful for every moment spent alongside so many amazing people through the

years. GISOC is special because of the commitment and perseverance of its mem-

bers. There’s never been a time that I didn’t have someone to call upon for support.

This time it’s Colleen Ma, a SIDS parent who will step into the role as president. Col-

leen has been working with the board for some time and was instrumental in our re-

cent fundraiser at the beautiful Anaheim White House. She is passionate about peer

support and has great vision for the organization.

My hope is that GISOC continues to thrive through the support of families that recog-

nize its significance and importance. I will never forget how much it meant to be able

to simply talk with other SIDS parents at a time I felt so alone. For this reason, my

gratitude and commitment to the organization will always remain.

As mentioned before, it’s Ryan’s birthday today--- a time to celebrate! So I bid you

farewell as I am off to Disneyland with the family, a tradition on this day each year.

All the best in 2013,

Jordy Jahn

WINTER issue VOL UME 94

GISOC Luncheon October 17th,

2012--Anaheim White House

Bruno Serato, long time owner of the histor-

ical Anaheim White House awarded the

Guild for Infant Survival Orange County

with a very special Luncheon for over 50

attendees on October 17th, 2012 from 11:30 to

1:30 pm. The GISOC then turned the gift into

a fundraising event and also honored three

very special individuals who were so de-

serving of recognition. (see below). It was a

wonderful luncheon, a great time to con-

nect with friends and SIDS families, enjoy

raffle prizes, listen to those who were hon-

ored, and just have a great and energized/

relaxing time with wine and music.

Thank you Seghesio Family Vineyards for

donating the wine and thank you Jordy

Jahn, our GISOC President who presided

over this event and made the wine dona-

tion possible. Thank You Jordy! Also a spe-

cial “Thank You” for all of those on the

luncheon committee who gave many hours

to make this event possible …Colleen Ma,

Rachel Strickland, Barbara Estep, our Ex-

ecutive Director of GISOC, Liz Willett, Al-

pha Doo, Evie Clemente, Karen Jackson,

OCHCA SIDS Coordinator, and myself.

The luncheon afforded a wonderful oppor-

tunity to give tribute and to .honor three

very special individuals, Ms. Lisa Biakanja,

Dr. Thomas Keens and Dr. Henry Krous.

Lisa Biakanja, a SIDS parent most im-

portantly, who lost Kristy to SIDS over 30

years ago on September 18, 1982 was hon-

ored for her dedicated service to SIDS par-

ents and families and the entire SIDS com-

munity. Lisa was given a gorgeous vase

and beautiful spray of flowers. In addition

to all that she does, Lisa also continues to

tirelessly produce our quarterly GISOC

newsletter which is always “over the

top”. Thank you Lisa!

Dr. Thomas Keens and Dr. Henry Krous

were honored for 30+ years of SIDS re-

search and education and their dedica-

tion to helping our GISOC. Dr. Keens was

given a $3,000 check to be used for SIDS

research at Children’s Hospital Los Ange-

les. Dr. Henry Krous who is retired was

given a beautiful decorative plaque with

inscriptions denoting his many years of

service and dedication to GISOC.

It was a great honor for me to be able to

introduce and to honor two doctors, two

individuals who have made more differ-

ences from their contributions to the

SIDS community here in Orange County,

California, US and internationally than

any two doctors I have had the privilege

to work with. These two world renown

professors, doctors, researchers, and edu-

cators have been our voices and our

hearts as we plea to find a cause for this

terrible disease, this tragedy, this devas-

tating destructive thing called Sudden

Infant Death Syndrome.

And if that isn’t bad enough we now

have to contend with other names for ba-

sically the same kind of death, namely,

SUID or SUDI and even in some jurisdic-

tions called an “undetermined”. What-

ever the label for SIDS, these 2 doctors

have gone to battle for us for over 30+

years and we owe them much more than

anything we can give them in the way of

awards or honors that we could bestow

Continued on Page 7


If you would like to contribute

an article or poem to an

upcoming issue of Reflections,

please contact: Lisa Biakanja at

(714) 960-9897 or email her at

[email protected]. The

next newsletter deadline is

2/1/13. We encourage your

participation!

Newsletter Deadline

Trauma and Grief:

The Dynamic Duo in Sudden Loss

Written by Lisa Marain, MSW, LCSW,

SUDC Support Services Coordinator

Grief is a natural process of emotions

that occurs when someone dies. It inte-

grates itself into normal routines with

variable timeframes for each person.

Complicated grief occurs when the ini-

tial grief emotions continue and signifi-

cantly impact functioning over the long

term. Professional support should be

sought around the six month mark if

symptoms of complicated grief are pre-

sent. Trauma can be a component of

grief. The purpose of this articles is to

describe:

Trauma related to grief

When professional services should

be pursued, and

The possible forms of treatment and

resources to pursue

One form of trauma a person can expe-

rience is when someone they love dies

suddenly and unexpectedly especially

a child. This can leave survivors feel-

ing helpless and vulnerable. Symp-

toms vary among individuals, but grad-

ually fade as the trauma is processed.

However, painful memories can resur-

face symptoms of trauma months and

even years after the loss. Time and

processing of the event are crucial to

the recovery process and acceptance

of the loss.

Emotional and Psychological Symptoms

of Trauma Can Include:

Shock, denial, or disbelief

Anger, irritabilitiy, mood swings

Guilt, shame, self-blame

Feeling sad or hopeless

Confusion, difficulty concentrating

Anxiety and fear

Withdrawing from others

Feeling disconnected or numb

Continued on Page 6

Cleaning Out in the New Year By Carlene Vester Eneroth, Spokane, WA

Hello! As we start a new year, we hear people talking about making resolutions or goals. I wonder if your goal might be to clean out a closet, room, study, den, office… wherever our special person used to keep their possessions? It’s the same place that literally shouts to us, “They’re gone” every time we go by it or glance in there or vacuum around it or whatever. Cleaning things out seems like one job we universally dread after death, don’t you think? I don’t know about you, but I remember thinking, “If I open this closet door one more time and see that old, familiar coat hang-ing there or that shirt I gave Greg last year that became a fa-vorite, I think my heart will burst right in two.” So, I tried to clean out some things very soon. Of course, way back in the recesses of my befogged mind I know I was hoping that by doing this little bit of “exorcism” somehow I’d instantly start to feel better. If you are thinking the same thing and are tempted to quickly rush through that job, let me caution you: A project of this emotional magnitude doesn’t produce instant good feelings. But don’t get too discouraged, either. I think it’s just another example of how we sometimes have to just muddle through grief instead of trying to dig a tunnel and work our way around it. Obviously, each of us must go at our own pace; and since grief saps so much of our energy, that pace is usually close to a snail’s! Maybe your children want to come help and you want to postpone the job until that time. Maybe a special friend or neighbor has volunteered to help you sort through the baby’s toys and drawers. You’re very blessed to have that kind of help at this incredibly difficult time. Be sure to save some things and not send them all away. To this day, I have my “Greg Box” downstairs. I’m remarried,

and yet I have stored away

wedding pictures, special

cards, family vacation al-

bums and other mementos

that seemed too hard to just

toss. When I did start sorting

things, I wasn’t thinking too

clearly about what to save or

how to save anything at all.

Thank goodness, someone

else suggested the idea of

keeping a box and having it

around to refer to from time Continued on Page 6

VOL UME 94 WINTER issue

Dear Members of the Guild for Infant Survival,

Orange County,

I would like to thank you so very much for the

wonderful luncheon you hosted on October 17,

2012, at The White House Restaurant. I was

thrilled to be honored by the Guild at this fes-

tive and enjoyable event. Thank you so much

for honoring me in this way.

Thank you also for your very generous $3,000

donation to our SIDS Research Program at

Children’s Hospital Los Angeles. As you know,

at Children’s Hospital Los Angeles, we have

been involved in SIDS research since 1979, and

we believe we have made some important con-

tributions toward a better understanding of

SIDS. However, the costs of maintaining such a

research program remain high, and funding is

increasingly difficult to obtain. Therefore, your

generous donation is greatly appreciated.

For the past three decades, we have enjoyed the

support of the Guild, for which we consider

ourselves very fortunate. If there is anything

that I, or other members of our SIDS Research

Program at Children’s Hospital Los Angeles,

can do for you now, or in the future, please do

not hesitate to contact me. Thank you so much

for the wonderful luncheon and your generous

research donation.

Sincerely,

Thomas G. Keens, M.D.

Professor of Pediatrics, Physiology and Bio-

physics

Keck School of Medicine of the University of

Southern California

As we begin to approach the holidays re-

member to be kind to yourself.

Hazardous Cosleeping Environments and Risk

Factors Amenable to Change: Case-Control

Study of SIDS in South West England

Peter S. Blair, Sr. Research Fellow, Peter Sidebotham, Assoc. Pro-

fessor in Child Health, Carol Evason-Coombe, Research Health

Visitor, Margaret Edmonds, Research Health Visitor, Ellen M A

Heckstall-Smith, Research Assistant, Peter Fleming, Professor of

Infant Health and Development Physiology

Objectives: To investigate the factors associat-

ed with Sudden Infant Death Syndrome (SIDS)

from birth to age 2 years, whether recent advice

has been followed, whether any new risk factors

have emerged, and the specific circumstances in

which SIDS occurs while cosleeping (infant shar-

ing the same bed or sofa with an adult or child).

Conclusions: Although socioeconomic markers

were more prevalent among the families of SIDS

infants, the major influences on risk were from

factors amenable to change within the infant’s

sleeping environment. Some of the risk reduc-

tion messages seem to be getting across and

may have contributed to the continued fall in the

SIDS rate. Identifying emerging dangers and re-

emphasizing ones already observed within the

infant sleeping environment may further reduce

the number of deaths from SIDS. This is clearly

illustrated in the current polarized debate sur-

rounding cosleeping.

The safest place for an infant to sleep is in a cot

beside the parents’ bed. Based on evidence

from research into SIDS it is questionable wheth-

er advice to avoid bed sharing is generalizable

and whether such a simplistic approach would

do no harm. Parents of young infants need to

feed them during the night, sometimes several

times, and if we demonize the parents’ bed we

may be in danger of the sofa being chosen. A

better approach may be to warn parents of the

specific circumstances that put infants at risk.

Parents need to be advised never to put them-

selves in a situation where they might fall asleep

with a young infant on a sofa. Parents also need

to be reminded that they should never cosleep

with an infant in any environment if they have

consumed alcohol or drugs.


The Grief of a Parent Who Has Lost an Infant

To experience the loss of an infant is to grieve for

what never was. After all the months of anticipation

and preparation, the actual birth of a child brings

the feeling of hope and fulfillment. Should that child

be stillborn, or die hours, days or even months lat-

er, the unrealized dreams become a source of pain

for the parents. No parent expects to outlive his

child; the death of an infant is often the loss of a

child unknown even to the parents.

The expected stage of grief, (guilt, disbelief, anger,

etc.) can have new directions for the parents who

have lost an infant.

1. Shame and guilt. Especially if the infant was

stillborn or had a birth defect, the mother may

feel she has failed as a woman. “Other women

have live, normal babies, why can’t I?” Should

an infant die months after birth, parents find it

hard to resolve feelings that it was their fault.

2. No memories. Parents may only have

“souvenirs of an occasion” (birth certificate, ID

bracelet) by which to remember their child. If

the infant is older, they may have pictures and a

few belongings, but they still feel they hadn’t

really gotten to know their child.

3. Loneliness in grief. It is hard for friends and

relatives to share your grief for a child they nev-

er knew. If the child is a newborn they may give

the impression that you are grieving unneces-

sarily over a non-person. They hope that you

can “forget this baby” and ”have another one.”

4. Neglected father. Too often the sympathies of

professionals and friends are directed mainly to

the mother. It is important to remember that the

father had made plans for this baby too.

5. Mothers vs. fathers. Since the mother has

bonded with her child all during pregnancy, her

grief may be much deeper than the father who

only came to know this child after birth. It may

be difficult for a father to understand why his

wife’s grief is so profound and so prolonged.

Claire McGauhey and Sue Shelley, TCF, St. Louis, MI

The Worldwide Candle Lighting

Held annually the second Sunday in

December, this year December 9th.

The Compassionate Friends Candle

Lighting unites family and friends

around the globe in lighting candles

for one hour in each time zone, allow-

ing all to join together in unity to re-

member and honor the memories of all

children who are no longer with us so

they may never be forgotten. This

year the OC Chapter Candle Lighting

Ceremony will be held at Grace Bible

Chapel in Fullerton. We ask that you

plan on arriving at 6:30 pm to allow

time to place a pho-

to of your child on

our memory table.

The Candle Lighting

will begin promptly

at 7 pm so that the

wave of light around

the world will not be

broken.

We do this...that their light may always

shine.

Your Gift is

Appreciated !

The Guild for Infant

Survival is a

United Way

Approved Organization

GUI300


Continued from Page 3

Physical Symptoms of Trauma

Can Include:

Insomnia or nightmares

Being startled easily

Racing heartbeat

Aches and pains

Fatigue

Difficulty concentrating

Edginess and agitation

Muscle tension

Consider Professional Support

When You Have:

Trouble functioning at home

or work after an extended pe-

riod of time

Suffering from severe fear,

anxiety, or depression

Unable to form close, satisfy-

ing relationships

Experiencing terrifying mem-

ories, nightmares, or flash-

backs

Avoiding more and more

things that are related to the

trauma

Emotionally numb and discon-

nected from others

Using alcohol or drugs to feel

better

Therapeutic Approaches

Trauma disrupts the body’s natu-

ral equilibrium, putting one in a

state of hyperarousal and fear.

The purpose of specific therapeu-

tic approaches is to address this

imbalance and reestablish a

sense of safety. Trauma treat-

ment and healing involve:

Processing trauma-related

memories and feelings

Discharging pent-up “fight-or

-flight” energy

Learning how to regulate

strong emotions

Building or rebuilding the

ability to trust other people

Types of approaches include:

Somatic experiencing takes

advantage of the body’s unique

ability heal itself. The focus of

therapy is on bodily sensations,

rather than thoughts and memo-

ries about the traumatic event.

By concentrating on what’s hap-

pening in the body, natural sur-

vival instincts take over, safely

releasing this pent-up energy

through shaking, crying, and

other forms of physical release.

EMDR (Eye Movement Desensi-

tization and Reprocessing)

Incorporates elements of cogni-

tive-behavioral therapy with

eye movements or other forms

of rhythmic, left-right stimula-

tion. These back-and-forth eye

movements are thought to work

by “unfreezing” traumatic

memories, allowing resolution.

Cognitive-behavioral therapy

processes and evaluates

thoughts and feelings that sur-

round a trauma. While cogni-

tive-behavioral therapy doesn’t

reat the physiological effects of

trauma, it can be helpful when

used in addition to a body-

based therapy such as somatic

experiencing or EMDR.

Additionally, self-help strate-

gies for coping can include:

Staying connected (i.e. vol-

unteer, social activities)

Support groups

Exercise

Patience

Practical support-accepting

support with concrete tasks

(i.e. grocery shopping,

laundry)

Don’t Forget the Kids!

Like adults, children can feel

intense sadness and loss

when a person close to them

dies. And like adults, chil-

dren express their grief in

how they behave, what they

think and say, and how they

feel emotionally and physi-

cally. Each child grieves dif-

ferently, and there is no right

or wrong way or length of

time to grieve.

Grief reactions vary among

developmental levels, and

children may show their

grief in many different ways.

Bereaved children may also

act in ways that those around

them may not recognize as

reactions to grief. Whatever

a child’s age, they may feel

guilt regarding the death.

Sometimes bereaved chil-

dren take on adult responsi-

bilities: worrying about sur-

viving family members as

well as their own wellbeing.

Professional involvement is

warranted if grief reactions

continue without any relief

and significantly impact the

ability to function.

A good exercise for the

heart is to bend down

and help another up...


Your gift to honor a

loved one will be

appreciated.

Send your tax de-

ductible donation

to:

Guild for Infant Sur-

vival, Orange County

P.O. Box 148

Tustin, CA 92781


to time. I can’t count the num-

ber of occasions when I’ve

gone down to look in the box

for a specific date or to find an

old photo or just to look — and

remember.

I’m sure many of you have

done lots of special things with

some of the possessions you

are keeping. (It seems to me

that grieving people all have

so much more creativity than I

could ever muster! Many of

you put me to shame.)

Darryl, my friend, Deanna’s

husband died in a trucking ac-

cident three years ago. Be-

cause he was involved in so

many community sporting

events and played on several

teams, she didn’t want to throw

away all of his things or put

them in a yard sale. With two

little boys at home, she was

smart enough to realize how

proud each of them would be

some day to have some of Dad-

dy’s special sports things. So

she bought two of those huge,

Rubbermaid, under-the– bed

boxes and put the boy’s

Names on them. Then she di-

vided up the jerseys, referee

shirts, autographed balls,

catcher’s mitts, etc. She also

thought to include a special

album that had pictures of

each boy by himself with Dad-

dy.

As she was telling me about

this project, the boys heard us

and ran out of the room.

Around the corner they re-

turned, huffing and puffing as

they dragged the boxes be-

hind them. They almost came

to blows over who was going

to be first to show me “MY

dad’s box.” even at such

young ages, those were al-

ready very special boxes.

Sheila, from Sault Te. Marie,

Michigan, wrote to mention

something she did as she do-

nated some of her husband’s

clothing. Thinking that some-

how his clothes would be

lonesome by themselves, she

sent along an item from her

own closet for each of his. She

thought they could still be a

twosome! I liked that sweet

idea.

Whatever you decide to do,

don’t let anyone rush you. On-

ly you can know when you’re

ready to tackle this project. It

won’t be easy, but then that’s

a pretty common grief ingre-

dient, isn’t it?

Everything,

( i n c l u d i n g

breathing it-

self) takes a

lot of energy

and just plain

hard work.

Good luck in this New Year!


upon them on October

17th, 2012 or any day.

Please know, Dr. Tom

and Dr. Henry, how

much we appreciate and

love the work you do and

continue to advocate for

all of us within the SIDS

Community.

Penny Statsny

The 32nd Annual California

SIDS Conference at The Cali-

fornia Endowment Center

The Conference this year was

truly remarkable. The Confer-

ence began with a 'Meet n

Mingle' for bereaved parents

and family members at The

Doubletree Grand Kyoto Ho-

tel. Parents were treated to a

quiet time to decorate a picture

frame and share their sto-

ries. An encouraging message

was delivered by Rev Ritter

reminding us that grief is a pro-

cess and an extra challenge

when someone you helped cre-

ate leaves this world. He en-

couraged us to not let our grief

be the end, but to use our pain

to bring more good into the

world. The memorial celebra-

tion concluded with breathtak-

ing music, a slide show of our

sweet babies, and a fantastic

offering of desserts.

The morning was opened by

Orange County's own Karen

Jackson who did an excellent

job as Conference chair. Our

keynote speaker, Dr. Hannah

Kinney, actually spoke by live

computer webinar due to the

hurricane on the East Coast.

Continued on Page 11


Comments from Dr. Keens: Guild for

Infant Survival, Orange County

October 17, 2012

John Lennon said, “Life is what happens to you

while you’re busy are making other plans”. Our

lives are marked by events that happen to us ---

some planned, but most unplanned and unex-

pected. I don’t have to tell this audience that some

of these events are profound, and they impact our

lives forever --- like the death of an infant who was

cherished and loved. Many of you have experi-

enced this, and the rest of us have been profound-

ly moved and inspired by observing your courage

in the face of great tragedy.

But, most life events are not so profound, are not

so compelling, but they offer us an opportunity to

pursue them or not. Our lives can be defined by

the decisions we make --- which events we pur-

sue, and which ones we let pass us by. I am here

with you today because I chose to pursue some of

these opportunities, but not others.

35-years, 2-months, and 2-days ago, I returned to

Children’s Hospital Los Angeles, as a young facul-

ty member, eager to change the world. I had just

completed my Pediatric Pulmonary Fellowship, at

the Hospital for Sick Children in Toronto, Canada.

At that time, I had no thought or desire to be in-

volved with SIDS. I had trained, I thought, to be a

cystic fibrosis researcher. But, institutional politics

can be powerful, so it quickly became clear to me

that this was not to be. Then, a perfect storm of

four events occurred, which changed the course of

my life, for the better.

First, I went to my boss, depressed about the ap-

parent blockade in my cystic fibrosis research ca-

reer. He said, “I think you should get involved in

SIDS. Not too many people are doing that.”

Second, we had a patient in the hospital with a

rare disorder where he did not breathe whenever

he went to sleep. I made the diagnosis, and he

was the first child that we sent home from our hos-

pital on a ventilator. Therefore, I became the “go

to” doc for patients with respiratory control disor-

ders.

Third, in the late 1970’s, many scientists be-

lieved that SIDS occurred when babies

stopped breathing during sleep. This was the

era when many babies were sent home on

apnea monitors. I was intrigued by this tech-

nology, and we established a large program at

Children’s Hospital Los Angeles to evaluate

and manage infants thought to be at high risk

for SIDS.

Finally, the California SIDS Information and

Counseling Project, as it was called then, sent

out a newsletter to all California pediatricians,

describing SIDS and their program. In a small

paragraph on the last page was a brief an-

nouncement that the physician member of the

Southern California Regional SIDS Council

had resigned, and they were seeking a re-

placement. Thinking I would be competing

against hundreds for the position, I sent in a

letter saying I was interested. Only a few days

later, I received a phone call from the pro-

gram, saying I was appointed. It is still true

that few physicians and scientists choose the

opportunity to be involved in SIDS.

When I attended my first Council meeting, I

was not exactly a hit. The SIDS parents on

the Council, including Chris Elliott from your

Guild, were not at all impressed with me as a

scientist, and my welcome was chilly, to say

the least. But, fortunately, I did persevere.

Since 1979, I have enjoyed unwavering sup-

port from the Orange County Guild for our

SIDS research. You have donated research

funding to us for over three decades, and you

unselfishly shared your precious babies with

us as research subjects.

I will not bore you with the details of all the

research we were privileged to perform. But

let me focus on a few highlights. Although we

started using infant apnea monitoring to man-

age infants at high risk for SIDS, we were one

of the first to show that pneumograms did not

predict SIDS. We participated in the CHIME

Study in the 1990’s. This was a multi-center,

NIH funded study which ended the use of

home apnea monitoring. Continued on Page 11


What Happens After Christmas!! By Mauryeen O’Brien, O.P.

Hamden, Connecticut

“I spent a lot of energy anticipating and

dreading the holidays.” Chris told me over

the phone one evening last week. “I pushed

myself to be with people, even though I didn’t

want to be. I even shopped for presents and

decorated the house as I had always done be-

fore Jim died. I guess it wasn’t as bad as I

thought it would be —though I have to tell you

it wasn’t great. But now I’m wondering, what

happens after Christmas? What happens to

me now that there aren’t a lot of people visit-

ing me, there are fewer distractions and there

is much less running around? What happens

now that I’ve worn myself out physically and

emotionally trying to cope with the pain of my

first Christmas without Jim? How can I get

through these next few months?”

Chris’s questions are very familiar to those

going through “separation pain” due to the

death of a loved one. There are many

“Chris’s” who have kept themselves overly

busy, running from store-to-store or house-to-

house, stuffing down old memories, traditions

and expectations. They find that once the hol-

idays are over, they are tired, nervous, dis-

traught and fearful of the long winter months

ahead of them.

We certainly can’t change the nature of the

winter that is upon us. No matter what we do

there will be days with fewer hours of sun-

light. It will be cold and snow and ice may

well keep us inside more than we would like.

Though none of that can be changed, what we

can have complete control over is “slowing

down” in mind and in body and giving our-

selves some time to heal from the pain of loss.

Winter is, in itself, a “slow” time. Life seems

to come to a halt for a while; trees are bare

and new life is dormant under snow-covered

earth. There is a quiet that hangs on the air. It

can be in the quietness, in this slow-paced ex-

pectancy of a spring that will eventually come,

that we can begin to open ourselves to the

gentle prodding of beginning a new life. But

in order to do that, we must indeed “slow

down.”

We can truly do something with these days

after Christmas. They can be quiet times

in which we can work at our healing and

growth. The healing will never be perfect,

and there will always be scars, because

love has the capacity to leave scars. But

the scars can produce a growth beyond

just survival.

The growing may be difficult. Indeed, the

grieving was and is. But as nature survives

the winter and moves into the freshness of

a new spring, we, too, can use this time

before us to begin to nurture ourselves,

listen to our inner yearnings, and realize

that this time can be put to growth.

What happens after Christmas? We take

the time to pay attention to ourselves and

to the possibility of using the cold and

dreary months, as nature does, to begin to

heal and grow. Spring always follows win-

ter no matter how harsh that winter has

been. So, too, can strength follow suffer-

ing, if we try to work through the suffering

to new life.

I am past intense grief, but not

loss.

Past questioning, but not wonder-

ing

Past relentless sobbing,

but not crying

Past guilt, but not regrets

I am simply years into my grief

And life as it has been defined by

the

Absence of my child.

By Sally Silagy


The Cord

We are connected, My child and I, By an invisible cord Not seen by the eye. It’s not like the cord That connects us ‘til birth. This cord can’t be seen By any on earth. This cord does its work Right from the start It binds us together Attached to my heart. I know that it’s there Though no one can see The invisible cord From my child to me. The strength of this cord Is hard to describe. It can’t be destroyed It can’t be denied. It’s stronger than any cord Man could create It withstands the test, Can hold any weight. And though you are gone Though you’re not here with me, The cord is still there But no one can see. It pulls at my heart I am bruised...I am sore, But this cord is my lifeline As never before. I am thankful that God Connects us this way A mother and child

Guild For Infant Survival,

Orange County

Information: 2130 E. Fourth Street #125

Santa Ana, CA 92705

Ph: (714) 973-8417

Fax: (714) 973-8429

(800) 474-SIDS (7437)

Email Address:

[email protected]

Website Address:

www.gisoc.org

What to Expect as You Face the Special Times The first year after your baby’s death is very hard, and your baby’s first birthday and the anniversary of his or her death may also be very difficult. Even if you seem better, the sadness and pain my return. It will be hard to be around other children, especially babies. These are normal feelings. It is OK to celebrate and enjoy these times. It is OK to laugh and cry at the same time. You can go from laughing to crying very quickly. Other children in your family will need help during the holidays to celebrate as they have in the past or to understand why things are different. Some parents… Choose to celebrate and participate in these occasions as they always have

in the past, but find it is a struggle. Sometimes they even avoid talking about the baby who died.

Choose to do completely different things during the holidays and special

events. They may not participate in any of the usual activities or traditions. Try to balance their participation in holiday activities and cope with the pain

and sadness of missing their baby. These are difficult and personal choices. Remember… What you and your family decide to do for anniversaries, during the holidays, or for special events is your choice. Your participation in these events may be very different during the first year or so. After a while, you may go back to normal activities or permanently change how you remember some holidays and special occasions.

Celebrating holidays and special

events will reflect your cultural back-

ground and traditions. It is important

for you to value these traditions be-

cause they are part of your life during

happy and sad times.

Quotation of the Day

“Death leaves a heartache no one can heal, love

leaves a memory no one can steal.”

From a headstone in Ireland



Perhaps, we are best known for our studies of

arousal or waking up to escape potentially danger-

ous situations during sleep. If a baby stops

breathing, or is found in a dangerous situation, the

best thing the baby can do is to wake up to move

or deal with the situation. We showed that all in-

fants, even those who will not die from SIDS, are

born with a potentially protective arousal response

to low oxygen, but they lose this at 3-months of

age, when the incidence of SIDS increases. This

is likely not the cause of SIDS in and of itself, but

perhaps it is a contributor.

You have also given us valued critiques on our

research. Several years ago, we studied arousal

responses in babies to light and sound. Unexpect-

edly, we found that siblings of SIDS victims did not

wake up as readily to a bright light as control in-

fants did. I was asked to present our research to

your Guild, and I did so with enthusiasm. But

those present did not share my excitement. Final-

ly, one SIDS parent said of her subsequent sibling,

“You know we are always going in and turning on

the light to see if our baby is still breathing. Maybe

they are just used to bright lights.” That woman

was right, and our research was not as profound

as we had thought.

More recently, we have been involved in research

investigating the role of the autonomic nervous

system, or life-support part of the brain, as a cause

of SIDS. We are collaborating with Biomedical

Engineers at USC, who are experts in cardi-

orespiratory control. It is my anticipation that this

work will ultimately be directly applicable to babies

and to SIDS.

Also, with the help of an internationally renowned

expert on mitochondrial disorders at Children’s

Hospital, we hope to investigate whether mito-

chondrial dysfunction might predispose some in-

fants to die from SIDS. We are planning to do this

study right here in Orange County.


There was not even a hint of technical challenges; it

was as though Dr. Kinney was really with us in Los

Angeles. Her research in brain stem serotonin is

remarkable and very encouraging. The laboratory

work her team is doing in collaboration with labs all

over the world brings me hope that medical under-

standing of SIDS will happen in my lifetime. It has

been a long time since the chatter around the Con-

ference was excitement about research.

A former colleague of Dr. Kinney and California

SIDS champion Dr. Henry F. Krous was rightfully

honored for his many years of research success and

commitment to the SIDS community. Dr. Krous will

enjoy his retirement, but we will certainly miss him.

Other notable moments included the parent panel

filled with parents who shared from their heart, Jeri

Wilson receiving the Boatwright Award, breakout

sessions for parents and professionals, and the drum

ceremony conclusion.

The California SIDS program did a wonderful job

planning and organizing this conference. I heard

nothing but positive feedback as the day pro-

gressed. Please keep an eye on the Guild website

for a link to the slide show and more information

about Dr. Kinney's research.

Colleen Ma

There are thousands of physician-scientists

working on cystic fibrosis, but perhaps only a

few hundred in the world working on SIDS. Rob-

ert Frost wrote:

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.

Thank you for giving me a cause I could em-

brace and work for. Thank you for inspiring me

with your courage in the face of tragedy. Thank

you for enriching and changing my life for the

better. Know that I have received very much

more from being involved with you, and with

SIDS, than I have given.

Thank you so much.

Thomas G. Keens, M.D.

Don’t forget to make your 2012 charitable dona-

tion today. The Guild uses 100% of your memori-

al donations towards research to ultimately find

a cure for Sudden Infant Death Syndrome.

Business Meetings– held at a private home. Call for directions. Meetings

begin at 7:00 PM. If you would like to have an item added to the agenda, please

contact Barbara Estep at (714) 973-8417.

*Please RSVP to Barbara Estep at (714) 973-8417 prior to the meeting.

December 13

March 12

Parent Support Meetings– All meetings are from 7:00—8:30 PM.

Meetings are hosted by Colleen Ma and Penny Stastny and take place at the

Guild for Infant Survival, Orange County office located at 2130 E. 4th Street,

Suite 125, in Santa Ana.

* Please RSVP to Barbara Estep at (714) 973-8417 prior to the meeting

November 17

December 10

January 14

February 11

March 11

Save the Date!

Angel of Hope Memorial Service

December 6, 2012 @ 7 pm

El Toro Memorial Park

25751 Trabuco Rd.

Lake Forest, CA


Special Thanks

Grants

We are deeply appreciative

of a grant from the CJ Foun-

dation for SIDS. Their sup-

port helps us to support the

Sudden Infant Death Syn-

drome community.

This newsletter is being pub-lished thanks to a grant from Wells Fargo Foundation.

Memorial Donations

In Memory of

Jacob Tyler Williams

“Baby Jake” Steve, Mary, Zachary and Katie Williams

We appreciate the

Employees Community

Fund of Boeing California

and thank them for their

generous grant, helping

the Guild to help others in

our community.

United Way Donations

Michelle Phillips (including a

matching gift donation)

Kendra Lakkees

Elaine Nelson

Reflections is a tri-annual publication of the

Guild for Infant Survival, Orange County

— a non-profit organization. Reflections is

committed to the collection and dissemina-

tion of accurate, up-to-date, scientific and

lay information and the correction of mis-

information related to SIDS. The Guild is

dedicated to the support of families and

friends suffering the death of an infant to

SIDS.

REFLECTIONS

P.O. Box 148

Tustin, CA 92781

Editor: Lisa Biakanja

Community Outreach

September 10, 2012—Penny Stastny,

Vice President of the Guild, made a

“Safe Sleep” presentation to over 100

childcare providers. Her presentation

was very well received and we have

been invited back in 2013.

REFLECTIONS - img1.wsimg.com

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